PoTs, EDS and other shit

A do over

Things go wrong, they always seem to go wrong given half the chance but the amount of stuff that went wrong yesterday (Tuesday) would have tried the patience of a saint. It seemed as if disaster was lurking around every corner. Ok so it was technically nothing serious, other than a potential fire and things could have been much worse. It was just a very, very trying day which thankfully now I am able to laugh about.

Tuesday started off very much like any other day, it is my husbands day off in the week, three out of four weeks, so there were jobs planned for him. Whilst I waited for him to wake up, I settled down on the sofa watching the TV and mentally planning out all the tasks that needed to be achieved whilst he was home.

I have started a new medication for my inner ear woes, which as yet I can’t order on-line as it isn’t on my repeat medication list as yet. I have to take it three times a day and so far it seems to be working. My ears have been popping like crazy which I can only assume is the fluid draining from them and although I have still had attacks of dizziness they aren’t as severe as when I wasn’t on it. So with medication getting low I sent hubby to the doctor’s surgery to get a repeat prescription request done. This was where I made my first mistake, to make life easier I decided to give him the box of medication – with the last few tablets inside. Looking back I know that this was inviting disaster but I just thought, well actually I couldn’t be bothered to write out all the information when it was all there on the box.

An hour later hubby returned home and told me the errands he completed for me. As we sat at the back door having a cigarette, he cheerfully announced “oh and I threw the empty box away.” He was so proud of himself for completing all the jobs but all I could do was stare at him in horror.

“You threw it away?”

“Yeah why?”

“Because it wasn’t empty…..”

“How was I supposed to know?”

“Because when you chuck something away, you check to see that it is empty”

I tried really hard not to fly off the handle, I knew that part of this was my fault for giving him the box with medication still in it. It was hard but I thought ok this can easily be remedied and I will just ring the surgery and explain what had happened.

Well what a silly assumption to make, that the doctor’s surgery would want to help. It seemed like they were deliberately trying to be obstructive. I wouldn’t have minded but Betahistine is not a controlled drug like Morphine. As a receptionist or a member of the prescribing team, I would be far more suspicious of someone who claimed their husband had thrown away their morphine than Betahistine. It took 4 phone calls and repeatedly explaining what the drug was used for to get the people at the end of the phone to see sense. Then after telling them hubby would go and pick the prescription up they faxed it through to a local pharmacy! Thankfully it was the usual one and hubby hadn’t set off for the doctor’s surgery.

As hubby was home yesterday it was our big washing day, so his sheets needed doing along with his pj’s. How they hadn’t marched downstairs under their own steam I have no idea. I love clean bedding and if I win the lottery I shall employ a housekeeper to ensure I have fresh bed linen every night. Hubby doesn’t seem to enjoy fresh sheets as much as I do.

Moments after he came home from running errands and announcing he had so helpfully thrown the “empty box away”, I opened the washing machine door to find a scene which can only really be described as carnage! I should have turned around and gone to bed there and then, looking back I wish I had. I said “oh no!” really loudly to which hubby replied “what am I being blamed for now?”. I explained to him it appeared a whole box of tissues had been put in the washing machine to which he tried to tell me it couldn’t possibly be his fault. It really wasn’t his day, firstly he was the one who had loaded the machine and secondly his was the only stuff in there. As I trawled through the damp washing trying to remove as much of the tissue as possible our kitchen floor started to resemble a snowy Christmas scene. I then found his pyjama bottoms with the offending tissue shredded to pieces in the pocket.

Having been met with his “what am I being blamed for now?” statement, I showed him the pocket of his PJ bottoms. Hubby is suffering from dreadful hayfever at the moment and although he normally uses handkerchiefs, he does on occasion use tissues. He went very quiet on seeing the evidence, I didn’t do a victory lap as I knew he already felt bad about mistakenly throwing away my medication and I knew that had been a combination of errors on both our parts. I did however make him stop hoovering the lounge so he could hoover out the pocket of his PJ’s – yes it was that bad only a hoover would get it clean.

I know you are probably reading this and thinking, it isn’t that bad, sounds like a normal day in my house. We are used to things going awry, it seems to be a family curse, it’s just not good when it happens all in one day. On the scale of things they aren’t bad things to happen, just deeply frustrating and if it had just stopped there I could have coped. Things had just gone wrong from the minute I got out of bed. It was only 11:30am and on top of these events I had already hyper-extended my knee backwards (so was limping) and had my hand rolled cigarette unravel dropping a burning piece of ash on my forearm causing a blister. The day had not been kind to me and I would have to wait until 7pm until I could run and hide under my duvet!

Hubby was now in a very grouchy mood, he doesn’t respond well to events like this and blames himself for them. Ok the tissue in the pocket was his fault but the medication being thrown away was both our faults. To keep the peace I agreed to watch some TV with him as there are a number of programmes that we watch together. Hannibal season 3 had started and we had still yet to watch it. We managed to get through that hour uneventfully and we had a break from the tv for a bit.

After I had showered and dressed we decided we would catch up with Wayward Pines which are both really enjoying. About halfway through the first episode we were watching my Next delivery arrived (Next is a shop in the UK). I took the delivery into the kitchen and unpacked it on top of the ceramic hob (stove top). We have limited space in the kitchen and this was the only place that was clear and clean. I checked over my order and decided I would try the bras on later, so I kept the packaging etc on the stove top. I know huge mistake, we do put stuff on the hob but tend to move it very quickly. We will be going back to that practice after what happened next.

An hour or so later I was sat at the back door when I smelt burning. I immediately turned to the cooker to see the orange light on telling me that a ring on the hob was on. As I looked I saw a glimmer of a flame and a spiral of black grey smoke. I raced across the room grabbed the burning bra and scissors that had partly melted onto the hobs surface and threw them in the sink. Hubby came racing in from the lounge to find out what all the shrieking about only to find me using a kitchen utensil to scrape the hob clean from melted bra and scissors.

All I can really say is thank goodness I was in the kitchen when the small fire started. I dread to think how bad it could have become if no one had noticed it. I was obviously gutted that I had been so stupid and that I had thrown away money by setting the brand new bra on fire. Luckily that was the only thing that was damaged beyond repair. I have to say how remarkably fire retardant Next bras are, if that is any comfort to anyone.

As soon as I could I went to bed as I realised no harm could come to me there. I seriously needed a do over! I have never ever had a day like it.

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3 thoughts on “A do over”

I know that you think you’ve learned from you mistake, however, next time it will be you who throws that empty box into the recycle bin and then it is disposed off by the Bin emptying Elf into the Large Recycle Bin which is then collected and emptied into the Council Rubbish truck.. Too late for you to realise what has happened and to get it back.

As a veteran of this being tidy and thinking of the Planet Earth Syndrome I well know how difficult it is to get an emergency short notice script from the Surgery. Albeit there is the new EPS [Electronic Prescription Service] should make it easier but only if you’re Surgery is signed up for it and you have signed up to at the surgery for your chosen Pharmacy. As you were finally able to get a faxed script then it would suggest that they’re not involved/ registered [yet, and it is worth checking to see if they will be in the future]. Where was, buggered if I know, so rather than read back I’ll iterate you first mistake was going to the Surgery yadayadayad …….

What you should have done and what all of us who have buggered up their Meds or Scripts so as to make it certain that you/they will not run out of an important med is to go directly to your local pharmacy and get them to do the leg work. A Pharmacist may issue an emergency script to cover the period it would take to a full Script issued by the Surgery. They have a direct link to the surgery, they know you’re taking the medication that you want the emergency script for and will contact the surgery so as to have the script issued and will give you the meds you need until the script arrives and they can fill for the balance of however many you GP will issue for a set period. For me it’s usually 28 days. So cut him some slack Rachel, I bet you done a lot worse to make life difficult than to throw a supposedly empty box away. I know that I have.

Anyway Rachel, I hope that helps in the future, obviously the EPS will make a big difference once the bugs are ironed out. I hope that this finds you both copasetic, or as close as possible to it. That Jill is on the road to a full recovery and that Lucy has overcome the worst of her Hyperemesis and that the remainder of her ‘Confinement’ is a more comfortable experience.

My sister unfortunately is still being sick, that is pregnancy in our family. My mother only stopped puking when she gave birth so Lucy knows that it will be the same. She was the same when carrying her first child only her vomiting has been much worse this time. She is on anti sickness medication but it does very little.

Mum on the whole is doing very well. We had a set back last weekend as she developed an infection in her scar. Thankfully after having an MRI they were able to rule out an infection in the bone and she is responding well to antibiotics.

As for my medication, my surgery has a repeat prescription thing on their website all the dr’s surgeries here have them. You can also book appointments on-line and do various other things.The issue was this was a brand new medication that hadn’t been set up as a repeat. My husband was sent to the drs surgery as you aren’t allowed to request medication over the phone as it ties up the phone lines. So he had to fill in a slip and give it to the reception team. Had it been one of my standard medications he could have approached the pharmacist at his work and got an emergency supply. Once it has been set up as a repeat medication if the situation should ever arise it will be an awful lot easier to sort out. The surgery fax the scripts so it gets to the pharmacy quicker as the pharmacy itself sends a person out once a day to collect the paper copies once a day. Even with electronic prescriptions by law the pharmacy has to have the paper copy to be able to claim the money back from the NHS.

I thought I had been quite mellow about hubby chucking the “empty not empty” box away. It was a combination of events that had been instigated by both of us. I can assure you should I have chosen to let rip about it you would have heard me! However I felt having a go at him for something that was both of our faults would be me passing off my guilt and pushing the blame onto him. He gets cut all the slack in the world because I understand the position he is in as a carer and working full time. Remember I worked, completed a university degree and was a carer. I understand and know the pressure.

I also thought I had made it quite clear that I didn’t blame him for what had happened. However I did feel he was responsible for #tissuegate. After all it was his stuff that he placed in the machine without checking the pockets – easily done. The same way I was entirely responsible for setting fire to the bra and scissors.

Thankfully I am doing a lot better now I am taking medication for my inner ear issues. I actually managed to do something other than just managed to get washed and dressed yesterday for the first time in ages. I was beginning to think that the sofa may need to be surgically removed from my arse!

I was pulling your leg about the blame bit. You know men sticking together and all that. And, with the EPS, a national system that is replacing paper scripts. If registered with a Surgery that has EPS, which eventually all surgeries will be required to sign up to by [sorry I’ve forgotten the date] but once using EPC faxing, according to the BMA’s website and our Specialist Pharmacist, who explained to the system to the Plympton Patients Group of Beacon Healthcare here in Plymouth. It’s supposed to be a quicker and more efficient service. There have been teething problems but when patients sign up and pick a pharmacy there will not be any need for paper scripts they will automatically sent electronically to a central system and then to the pharmacy. It’s also cheaper. I get mine through [The Spinal Injuries Association] SIA Healthcare who then Courier all of my meds and my catheter stuff to me every 28 days. I don’t have to deal with the surgery at all. SIA deal with it and I speak to the same person every month and they know my needs and, hopefully it leads to a less stressful and boring process. It means that I receive everything together at the same time. I only have to deal with the Surgery for Acute meds, like Antibiotics if I get a UTI that won’t go away through other methods.

I’m sorry to hear about Lucy, it must be awful for her. I’m glad, though, to hear your Mom is recovering, despite the infection in her scar. The problem with spinal surgery is that we lie on the scar and the heat of the body and the bed are not exactly conducive to good healing process for scars. Still, hopefully the Antibiotics will clear it quickly and I hope that I’ll see her again soon.

Look after yourself Rach, we only have one life and we need to make the most of it. I would rather not spend so much time on my bed but I try to fit as much work in as I can to help Disabled People and Veteran’s in Plymouth. I hope I’ll get to see you sometime, it’s been a long time.